HIV is a serious chronic infection that can be managed throughout life with highly effective current therapies. This is demonstrated in the increasing numbers of people living with HIV to older ages. In Scotland there is very good access to treatment for HIV, and it is vital that we test and diagnose all of those who have been infected but remain undiagnosed. Normalising testing and expanding provision of testing is key to this. While treatment is highly effective, public and individual health in Scotland is best improved by preventing infections, and this must also continue to be a priority.
Key Progress since 2011
- As MSM continue to be most at risk of HIV infection in Scotland, the Scottish Government funded NHS Lothian and NHS Greater Glasgow and Clyde to undertake an HIV prevention needs assessment amongst MSM. This work was published in June 2014 and will inform the development of prevention services with MSM in Scotland. Main findings included the importance of vulnerable men (mental health, esteem) and specific populations such as younger men; challenges around the knowledge, skills and interest of staff; the importance of HIV testing and knowledge/discussion of HIV status, and the emotional importance attached to anal sex for some MSM.
- NHS Lanarkshire and Glasgow Caledonian University undertook research in relation to MSM, social media and sexual health which was published in 2013 which should also inform the development of services across Scotland.
- Over the period 2011 to 2015 the MRC/CSO Social and Public Health Science Unit at the University of Glasgow has published a number of papers relating to HIV and MSM issues relevant to the work of the Framework. In particular valuable research was undertaken by the Unit and Health Protection Scotland on HIV prevalence and undiagnosed infection amongst MSM in Scotland.
- The Always Hear awareness raising campaign, delivered by Waverley Care and funded by Scottish Government has provided materials and information through targeted groups (schools and churches/faith groups) as part of our work to inform, educate and to challenge stigma.
- The Scottish Government has updated legislation previously preventing the sale and marketing of HIV self-tests. The HIV Testing Kits And Services Revocation (Scotland) Regulations 2014 has revoked the HIV Testing Kits and Services Regulations 1992, lifting the ban on the sale of instant result testing kits in Scotland, from 6 April 2014 as long as kits meet European quality standards. In light of this change, and following leadership on this issue by HIV Scotland, a subgroup of the Executive Leads Group published a questions and good practice document on instant result self-testing in March 2014. The good practice document was the first of its kind in the world, and has since been used internationally as an example of good practice by the World Health Organization
- As of December 2014, 91% of persons attending HIV services for monitoring were receiving antiretroviral therapy across Scotland with high levels of viral suppression being achieved. Scotland is therefore meeting UNAIDS 2020 target of 90% of all people diagnosed with HIV infection receiving sustained antiretroviral therapy. These data suggest continuing high levels of care and treatment are being provided for the increasing number of people living with HIV in Scotland. However, Scotland still does not meet the target of 90% of infected individuals being diagnosed - this remains an area for improvement.
- NHS Education for Scotland, in partnership with the HIV Clinical Leads Group, has developed a CPD programme 'Recognition and diagnosis of HIV infection' which targets registered healthcare practitioners in non-HIV specialist settings. These resources discuss opportunities for diagnosis of HIV using case studies and clinical information.
- All NHS Boards in Scotland now have protocols in place in relation to HIV post-exposure prophylaxis (PEP) for sexual and non-sexual exposures.
- In July 2011 Healthcare Improvement Scotland published a self-evaluation tool for standards in HIV prevention, treatment and care and supported Boards in developing Integrated Care Pathways (ICPs). The HIV Clinical leads network continues to monitor progress on the standards, but all Scottish NHS Boards now have ICPs in place for the initial three months after HIV diagnosis.
- In 2013 the Crown Office and Procurator Fiscal Service in Scotland published a new prosecution policy on intentional or reckless transmission or exposure to sexually transmitted infections. The policy was drawn up in partnership with public health and Third Sector organisations such as HIV Scotland, the National AIDS Trust and the Terrence Higgins Trust. The Crown Office is one of the few prosecution services worldwide to have published its prosecution guidance on this issue.
- HIV Scotland have developed a campaign around World AIDS Day to encourage a range of businesses to raise awareness of HIV/AIDS.
- An increased number of NHS Boards have worked with migrant communities at risk of HIV infection, especially those from sub-Saharan Africa, making use of resources provided by Waverley Care.
- Since 2011 the technology and regulatory landscape in relation to instant result self-testing kits has advanced. In 2011, a House of Lords Select Committee stated that the ban on home testing had become unnecessary and unsustainable, and should be repealed. In July 2012 the first device specifically designed for home testing was approved by the US Food and Drug Administration. The first HIV home tests became licenced and available for use in Scotland in April 2015.
- In 2014 avidity tests became available in Scotland allowing clinicians to ascertain the likelihood that HIV infection had been recently acquired. Knowing whether infections are recent or not provides a more accurate picture of who in the population is at increased risk of HIV infection; can help target resources to the populations in greatest need; contributes to the monitoring and evaluation of HIV prevention initiatives and HIV testing strategies; and helps describe changes in the epidemiology of HIV infection, and therefore the future human and economic costs of HIV. Avidity testing is also a key tool in accurate contact-tracing.
- In January 2014 the UK Advisory Panel on Healthcare Workers infected with Blood Borne Viruses (UKAP) published updated guidance on the management of HIV-infected healthcare workers who perform exposure prone procedures. As a result of this updated guidance HIV-infected health care workers who previously were prevented from undertaking exposure-prone procedures - and who therefore may have had limitations placed upon their career - could now undertake such procedures where they meet certain monitoring and/or treatment requirements.
- On 24 February 2015 the 'PROUD' study on the impact on gay men of using pre-exposure prophylaxis (PrEP) was presented. The PROUD study reported that PrEP reduced the risk of HIV infection by 86% for gay and other men who have sex with men when delivered in sexual health clinics in England.
- Almost one in three people living with diagnosed HIV infection is now aged 50 years and over. This is due to improved survival and continued transmission amongst older people and signals a need to develop services appropriate to an ageing population.
- The emergence of new psychoactive substances in recent years gives rise to a number of issues relevant to the Framework, including the work of IEP services and the risks associated with injecting of NPS, but also the increased potential for risk-taking behaviours amongst individuals while using NPS.
Prevention of HIV infection continues to remain a priority. It is clear that while core prevention strategies - including condom provision by services, provision of sterile injecting equipment, and advice and information - are important, there has been no significant reduction in the transmission of HIV over the last five years. Men who have sex with men (MSM) remain a key risk group for the transmission of HIV and this is why the Scottish Government funded the MSM prevention needs assessment referred to above. This report provides important lessons to inform service delivery and engagement with MSM. As set out in the original Framework document, multi-agency partners should make use of the most up to date evidence to inform prevention approaches. Likewise, the research by the MRC/CSO Social and Public Health Science Unit at the University of Glasgow and Health Protection Scotland, on HIV prevalence and undiagnosed infection amongst MSM in Scotland, is important in relation to HIV testing and prevention policy. NHS Boards and other partners should ensure that future prevention and testing strategies in this at-risk group are informed by up-to-date research and evidence such as these publications.
Prevention work should also reflect the needs of other groups, including heterosexual populations: people who have come from areas of higher prevalence, particularly sub-Saharan African countries; young people; and older heterosexuals. The age distribution of people newly diagnosed with HIV is changing, with diagnoses among older age-groups showing an increase both in number and proportion. Almost one in five newly diagnosed heterosexual people was aged 50 years or above in 2014 compared to one in ten in 2004. Sexual health services should be able to meet the needs of all populations, but NHS Boards should also be aware of the potential that not all populations will access sexual health services. The needs of other populations should inform service design, and the Scottish Government and Executive Leads will continue to assess what further research or prevention needs assessments are required in light of current epidemiology.
Transmission of HIV among other populations in Scotland occurs infrequently and, generally, the comprehensive provision of injection equipment and opiate substitution therapy has led to long-term control of HIV infection among PWID; the impact of this combination of interventions in saving lives and healthcare costs should not be underestimated. Nevertheless, evidence generated in late 2014/early 2015 indicates that HIV infection is being transmitted among a small, but appreciable, population of highly chaotic, vulnerable, and often homeless PWID. Such transmissions reinforce the importance of prevention work with such populations.
PrEP has emerged as a potentially effective prevention strategy, particularly for high risk MSM. In Scotland market access arrangements for new medicines are through recommendations from the Scottish Medicines Consortium (SMC). The SMC will only consider new treatments within their licensed indication once they have been granted a marketing authorisation. Manufacturers seek marketing authorisations (licences) for the new drugs/indications from either the European Medicines Agency (EMA) or Medicines and Healthcare products Regulatory Agency (MHRA). As yet relevant pharmaceutical manufacturers of PrEP candidates have not made an application for such approval. The Scottish Government will continue to monitor the regulatory position in respect of Pre-Exposure Prophylaxis in Scotland but in anticipation of developments in this area the Scottish Government will work with HIV Clinical Leads, the Executive Leads and HIV Scotland to consider policy implications and to understand attitudes and knowledge of professionals and the public. The MRC/CSO Social and Public Health Sciences Unit at the University of Glasgow has published work on the attitudes towards PrEP amongst those at risk of HIV, and this will inform future work.
Testing and Diagnosis
The testing of individuals at risk of HIV infection, and the diagnosis of those who have been infected continue to be priorities. People living with HIV can expect far better clinical outcomes if they are diagnosed promptly, and yet in 2014, 49% of those newly diagnosed with HIV in Scotland were already at a late or very late stage of infection. A person diagnosed very late can have a life expectancy at least ten years shorter than somebody who starts treatment earlier in the course of infection, and late diagnosis is also associated with increased morbidity, impaired response to treatments and increased cost to healthcare services.
NHS Boards and multi-agency partners should continue work to offer HIV testing to all those who may be at risk of HIV infection. Consideration should be given to innovative approaches to increasing testing, such as community and self-testing, and testing in other healthcare settings; working with Third Sector organisations to deliver testing in the community; and supporting Primary Care and other clinical specialities to be aware of the risks of HIV and to consider testing when appropriate. The Scottish Government will do all it can to support such innovative approaches or pilot studies, including supporting work to improve local-level data on HIV prevalence.
Normalisation of testing for HIV continues to be a challenge. HIV should be treated like any serious condition. Consideration of traditional risk factors are no longer enough in terms of testing, and services should think beyond groups such as MSM, sub-Saharan Africans and young people. Key to this is the education and awareness-raising of professionals and the public, and securing the support of regulatory bodies to efforts to normalise testing. The Scottish Government and the Scottish HIV Clinical Leads are of the view that testing for HIV should not be exceptionalised. HIV tests should be regarded as a routine investigation in all healthcare settings comparable to other clinical investigations. Such testing is likely to be cost effective in terms of early entry into treatment of HIV positive patients and reduced transmission of infection.
In 2014 the World Health Organization (WHO) published Consolidated Guidelines on HIV Prevention, Diagnosis, Treatment and Care. These Guidelines clearly define groups who, due to specific higher-risk behaviours, are at increased risk of HIV irrespective of local epidemiology. These populations are: men who have sex with men; people who inject drugs; people in prisons and other closed settings; people involved in commercial sexual exploitation; and transgender people. Although there is a need not to limit testing and responses to those most at risk, these groups must be reflected in the priorities of the Framework, and targeted efforts must be made to ensure services meet the needs of these groups, and that populations are partners in service design and HIV response.
In line with the WHO Guidelines, and reflecting the priority given to HIV testing, the Scottish Government will work with NHS Boards and the Scottish Prison Service to introduce opt-out BBV testing (hepatitis B and C and HIV) for all new prisoners in Scotland during their induction period. This will provide an important opportunity to test and support a population who may otherwise not engage with health services.
Treatment and Care
Individuals living with HIV in Scotland have access to high quality clinical care and the overwhelming majority of individuals diagnosed are engaged with specialist services and are on antiviral therapy. NHS Boards meet the costs of HIV antiviral therapy and as those who are infected live longer lives, and while new infections continue to occur, the overall cost of treatment of HIV for the NHS will continue to rise. The Scottish Government will continue to work with patient groups, NHS Boards and NHS National Procurement to look at innovative ways of reducing the costs of HIV therapy for those infected, including the use of generic antiretrovirals and national procurement of medicines.
One in three people living with a diagnosed HIV infection is now aged 50 years or over. This is due to improved survival and continued transmission amongst older people and signals a need to develop services appropriate to an ageing population. Over the next five years this population will continue to grow and services should consider the needs of those aged 50 and over in the design of services, and when undertaking needs assessments. Those in this age group will also need access to information about their rights and what to expect from services. The Scottish Government will therefore support the development of materials for care services and patients in this group to help raise awareness and promote effective support. This relates not only to NHS services, but also to residential and domiciliary services provided by Local Authorities.
Over the last five years the Scottish HIV Clinical Leads have taken forward work to ensure delivery of the Healthcare Improvement Scotland Standards for HIV Services. This has contributed to the development and use of Integrated Care Pathways across the NHS in Scotland. Given the need for additional focus on testing and preventing late diagnosis in particular the Scottish Government will work with the HIV Clinical Leads to ensure delivery of the HIS HIV standards in relation to reducing/preventing late diagnosis, (Standards 6 and 7) and with the Scottish Sexual Health Promotion Specialists on promoting HIV testing with key population groups.
Awareness Raising and Stigma
The Scottish Government is committed to raising awareness around HIV as a public health issue, both in relation to important health messages (prevention, testing and diagnosis) but also as a means of tackling and reducing stigma. In the course of the last Framework the Government undertook work towards developing a new national awareness-raising campaign on HIV. However initial research with the public on potential approaches to such a campaign led to an unexpected finding: that any high level public awareness campaign led by Scottish Government is likely to have a negative effect. The very fact that there is a Government campaign about HIV raises concerns rather than awareness, and does little to reduce stigma.
On this basis the Government took a different approach and invested in targeted awareness raising. The HIV Always Hear campaign, which was designed and implemented by Waverley Care, has made use of personal stories and case studies of those infected with HIV to develop a suite of resources. The campaign has so far provided information and raised awareness amongst schools and faith organisations, and has been evaluated positively. The Scottish Government will continue to fund the delivery and on-going development of Always Hear as a targeted awareness-raising campaign over the period 2015/16 and 2016/17, after which further research will be undertaken on the potential benefits of a national campaign, or on the continued/wider use of Always Hear. This work does not obviate the need for local awareness-raising activities by NHS Boards and other partners, and such work should continue.
For young people, HIV (and STIs) should be part of Relationships, Sexual Health and Parenthood (RSHP) education which should continue to be provided to all young people, in all schools and wherever learning takes place, with delivery in line with equality and diversity legal obligations.
Some progress has been made over the last five years in raising awareness and tackling stigma in professional organisations. In particular the publication by the Crown Office of their updated prosecution policy on transmission of sexually transmitted infections is something of which Scotland can be proud. However, more work is needed in the criminal justice field to tackle stigma. The formation of Police Scotland as a national police force has provided an opportunity for a more streamlined approach. Police Scotland has worked with HIV Scotland and the National AIDS Trust to produce and publish guidance to officers on how to treat someone who is living with HIV, (including confidentiality, rights and access to treatment while in police custody), but the Scottish Government will continue to work with Police Scotland, either directly or through NHS Boards and Third Sector organisations, to support them in their engagement with individuals who may be infected with HIV.
The views and behaviours of NHS staff are also important. Stigma from those working in healthcare professions has been shown to be particularly high amongst people living with HIV, therefore targeted work is needed with a range of non-specialist staff to provide up-to-date factual information and resources. On-going development of HIV Always Hear to target health care staff will help address this, but NHS Boards should also seek to assess the views of employees on HIV to inform professional development and training.
Workforce education development
NHS Education for Scotland (NES) has been funded to work with the HIV Clinical Leads to develop a CPD programme promoting the recognition and diagnosis of HIV infection by staff in non-HIV specialist areas. NES, working with partners, will continue to develop and support HIV national resources. Education and training of non-specialist staff is relevant to the above discussion in relation to stigma.
Email: Lynsey Macdonald
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